Sunday, March 26, 2017

I'm the One Who Doesn't Want to be Cured


    Others write about epilepsy as if it is a stalker, waiting to grab them when they least expect it. It's my oldest friend, one who is always there for me if I need a quick getaway from life but my conscious mind doesn't realize it.
     I'm not sure where it takes me, but the road is covered with childhood memories...My aura typically comes as I remember something from my elementary school days and then become "sucked into" that place and time again.
     Even as I look around and realize it's 2017, and I'm having a seizure, I cannot fully participate in this time and place because my mind is there. I can force myself to talk as this is happening, but it's very hard as I pause to think and then say each word. (I posted a video to YouTube this morning of myself talking while experiencing aphasia.)
     When I come back, I almost always feel better than I did before...Like I'm walking on sunshine.
     Sometimes, I'm giddy and silly, as if I brought a bit of my younger self with me to entertain my family.
     Other times, I return with intense spiritual feelings, as if I have been in the presence of God, deeply connected to every living thing around me and ashamed for time wasted on doubt. (I like to call it that Lion King feeling.)
     It's too difficult to explain without sounding like a crazy person.
     That was my fear during those six years that it happened but I didn't know its name. Before I was diagnosed at age 22, it seemed the only explanation remaining was something mental.
     So by the time I found out its name, I was already comfortable with its predictable weirdness and warm afterglow. It helped that a family member made the introduction,  taking away the initial alarm that comes with the word, Epilepsy.
    My big sis wasn't a full doctor yet but already knew the rules about taking medication and getting blood levels checked and folic acid supplements. She also knew which books I should read to better understand my brain after the official doctors confirmed her suspicions.
     That's how I know there are others like me...people with temporal lobe epilepsy who do not want to be cured and who describe their seizures the same way I do, with a glazed, faraway look in their eyes but inability to put into words what it's like to go there and come back, again and again and again.
     Would you be eager to give that feeling up, knowing you might never get it back again?
     By my estimates, I've made the trip around 1000 times, mostly in the late 1980s and over the past couple of years. It's always that same familiar feeling..a dash of panic followed by recognition of what's happening and then the trip.
     I didn't realize until I was able to videotape myself that it lasts minutes rather than seconds and that I sometimes pass completely out but forget that it even happened. That was a big reality check for me in terms of its power to deceive and make me forget how dangerous our journeys together can be.
     Trying to describe all the gifts this sacred disease has given to me would be tedious because I would try to base it all in neuroscience rather than my own experience and theories, which would be super-boring. Being able to write about anything easily would typically be my first answer, but that skill isn't so great today.
     Some of the people in those books I read enjoy their seizures so much they don't take their meds. I'm not like that because I know it could be hurting my brain without me realizing it was happening, slowly over time.
     So please do not misunderstand this post. It isn't a call for everyone to flush their meds and try to embrace the "fun" side of epilepsy.
     I want a cure for other people, the ones who feel stalked and afraid to go out because it might happen where people can see. I especially want a cure for the children whose brains are being worn out by uncontrolled storms day and night.
     But I want to stay the way I am and keep working with my neurologist for control.